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Less Hidden Celiac Disease, But More Americans Avoiding Gluten

Researchers are seeing less hidden celiac disease, but more cases of people going gluten-free without diagnosis.

Photo: CC--Peter 01/20/2017 - A team of researchers recently investigated trends in the prevalence of diagnosed celiac disease, undiagnosed celiac disease, and people without celiac disease avoiding gluten (PWAG) in the civilian non-institutionalized US population from 2009 to 2014.

The research team included Rok Seon Choung, MD, PhD, Aynur Unalp-Arida, MD, PhD, Constance E. Ruhl, MD, PhD, Tricia L. Brantner, BS, James E. Everhart, MD, and Joseph A. Murray, MD.

They are variously affiliated with the Division of Gastroenterology and Hepatology, Mayo Clinic, Rochester, MN; the Department of Health and Human Services, National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health, Bethesda, MD; Social & Scientific Systems, Inc., Silver Spring, MD; and with the Division of Cancer Epidemiology and Genetics, National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health, Bethesda, MD.

Their team studied the occurrence of celiac disease and PWAG in the 2009 to 2014 National Health and Nutrition Examination Surveys. They tested serum of all participants aged 6 years or older from the National Health and Nutrition Examination Surveys from 2009 to 2014 for celiac disease serology at Mayo Clinic.

They also interviewed participants for a diagnosis of celiac disease, and the use of a gluten-free diet (GFD). They incorporated the design effects of the survey and sample weights into all statistical analyses.

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They found that, in the US general population, rates of celiac disease did not change significantly from 0.7% (95% CI, 0.6%-0.8%) in 2009 to 2010 to 0.8% (95% CI, 0.4%-1.2%) in 2011 to 2012 to 0.7% (95% CI, 0.3%-1.0%) in 2013 to 2014. However, rates of undiagnosed celiac disease decreased from 0.6% in 2009 to 2010 to 0.3% in 2013 to 2014.

In contrast, the prevalence of PWAG increased significantly from 0.5% (95% CI, 0.2%-0.9%) in 2009 to 2010 to 1.0% (95% CI, 0.6%-1.4%) in 2011 to 2012 to 1.7% (95% CI, 1.1%-2.4%) in 2013 to 2014 (P=.005 for trend).

Their data shows that, even though rates of celiac disease remained largely stable from 2009 to 2014, the percentage of individuals with hidden celiac disease decreased substantially.

Moreover, the proportion of individuals who follow a gluten-free diet without celiac disease rose sharply during that period. Long-term health consequences of a GFD warrant further investigation.

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4 Responses:

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said this on
23 Jan 2017 7:00:47 AM PDT
Testing? Just wondering why would anybody would take a test which is not reliable?

Sandy B
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said this on
24 Jan 2017 7:05:08 AM PDT
I'm with you on that, Albert. I self-diagnosed with at least gluten-sensitivity and over a period of months, lost all of my symptoms related to possible celiac disease. My doctor was not happy with my "self-diagnosis" (and happy riddance of symptoms) and wanted me to go off my GFD and take the test. I had finally gotten rid of gut pain, joint pain, dematitis herpetiformis, etc., that I had put up with for years and years, and go off my GFD just to prove to him that I really had celiac -- and welcome back all the symptoms -- for an unreliable test. Nope, didn't happen. I happily remain free of celiac-related symptoms (5-6 years later) and NO tests! You have to learn to take care of yourself any more.

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said this on
23 Jan 2017 10:15:26 AM PDT
Repeatedly, we read that celiac is the only reason why a person would "need" to be on the GFD. I propose that there are very good reasons why individuals would need to be on the GFD without having celiac. Maybe we should ask them, instead of assuming that because they aren't celiac or "trying to lose weight or "fad dieters", they don't have a good understanding of what they are doing...

CJ Russell
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said this on
24 Jan 2017 5:51:15 AM PDT
I have not been diagnosed as celiac. I suffered for over 25 years with migraines, as well as alternating between diarrhea and constipation. An acupuncturist suggested that I cut all starches out of my diet for a month, then add them back in slowly. I found that gluten is my trigger. When I researched testing for celiac I found that I would need to eat gluten again for a while before I test. Why would I do that? Why would I live with migraines again just to have a diagnosis on paper? My pre-GF colonoscopy showed intestines that look like those of a celiac. That's good enough for me. I don't need weeks of suffering to prove to myself, or anyone, that my GF diet is not just a fad.

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